Wednesday, November 11, 2009

Veterans Day - Lest we forget

A thank you to all soldiers for your service and your sacrifice -- whether it be behind a desk or a rifle -- you will be always remembered for what you have done so that we may enjoy our freedom.

War Veterans
The 11th Hour: The Date Behind Veterans Day

by Claudine Zap

While most know that Veterans Day honors those who have served in the military, the meaning behind its exact date (November 11) may not be so familiar. Here's the backstory:

Back in 1918, in the 11th hour of the 11th day of the 11th month, a stop to hostilities was declared, ending World War I. An armistice to cease the fighting on the Western Front was signed by the Allied powers and Germany.

President Woodrow Wilson immediately proclaimed the day "Armistice Day," kicking off the annual commemoration on November 11. But over the years, with veterans returning from World War II and the Korean War, Armistice Day became Veterans Day — a day reserved to honor veterans returning from all wars. But 11/11 still represented the end of the Great War in the public's mind, and the date stuck.

In 1921, unidentified dead from the war were buried in Arlington National Cemetery in Washington, D.C., Westminster Abbey in London, and the Arc de Triomphe in Paris. The tradition to honor those killed in the war but never identified continues every year in the U.S. The ceremony is held at 11 a.m. at the Tomb of the Unknown Soldier at Arlington National Cemetery.

Congress designated Veterans Day as a legal holiday in 1938, and since then, most Americans have come to know it as a day for store sales and parades. Yahoo! Searches on the holiday have already surged on the Web. People want to know "veterans day history," "veterans day closings," veterans day sales," and "veterans day free meals."

Tuesday, November 3, 2009

About Pulmonary Hypertension

Pulmonary hypertension is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
When pulmonary hypertension occurs in the absence of a known cause, it is referred to as idiopathic pulmonary arterial hypertension (IPAH). This term should not be construed to mean that because it has a single name it is a single disease. There are likely many unknown causes of IPAH. IPAH is extremely rare, occurring in about two persons per million.
Secondary pulmonary hypertension means the cause is known. A common cause of secondary PH are the breathing disorders emphysema and bronchitis. Other less frequent causes are the inflammatory or collagen vascular diseases such as scleroderma, CREST syndrome or systemic lupus erythematosus (SLE), the list goes on.
Pulmonary hypertension occurs in individuals of all ages, races, and ethnic backgrounds although it is much more common in young adults and is approximately twice as common in women as in men.

Merle - OHPA

Monday, November 2, 2009

Blood Clot in Lung can cause Pulmonary Hypertension

An unexpectedly large number of patients who survive a blood clot in the lungs develop a potentially dangerous high blood pressure in the pulmonary artery researchers report. Finding show that pulmonary hypertension occurs far more frequently than expected.

Pulmonary embolism, a blockage of an artery in the lungs, strikes an estimated 600,000 Americans every year and causes approximately 60,000 deaths. It is, in fact, one of the leading causes of sudden death in this country.

Pulmonary hypertension, on the other hand, is a condition that can strain the heart, which must work harder to push blood through the lungs, but one that is often ignored because it causes few or no symptoms in many patients.


It has been thought that only a few of those who survive a pulmonary embolism go on to develop pulmonary hypertension -- one in 1,000 at most. But the incidence amount of those patients studied (223) was much higher says a report in an issue of the New England Journal of Medicine.

At six months, 1 percent of patients had pulmonary hypertension. That increased to 3.1 percent after one year and 3.8 percent after two years. Hypertension generally developse slowly after a pulmonary embolism. There is "a honeymoon period" of a few months, and then the incidence begins to increase.

The condition can be caused by lung disease, by failure of the left side of the heart or by a congenital heart disorder such as a faulty valve. In a small number of cases, usually involving young women, there is no apparent cause.

These often are difficult to diagnose and have treatments that are quite different. For example, if the cause is a bad heart valve, surgery is done to replace the valve. If the cause is lung disease, treatment is aimed at correcting the lung condition.

When the cause is a plmonary embolism, an effective treatment is endarterectomy, surgery to removed the clots that are blocking the artery. The technique was developed at the University of California, San Diego, and is now widely used.

Often, the only warning sign of pulmonary hypertension is shortness of breath. And how often is that ignored

Opha

Saturday, October 31, 2009

In my humble opinion an epiphany of sorts

This is from a friend -- I thought it worth reading.

Occasionally, after specific things have been rattling around in our heads for awhile, there may be a fortunate moment when at some connections are made. I got lucky, I hope.

As I was contemplating and yes, that's as far as it got, repairing a closet door, it occurred to me that a recent PH Specialist visit which resulted in an outcome similar to that experienced 14 times by a PH patient described elsewhere, may not have been the disaster that it first seemed. Although the physician's impression was incorrect, ("I am not sure you have PH"), I most certainly recognize that he is an exceptional doctor. He is widely recognized as being an expert in certain PH areas and was a very impressive individual. Besides, I am not qualified to evaluate his medical skills, and will not attempt to do so. My disagreement is with the scope of the evaluation. Pulmonary function test and the six-minute walks are standardized screening and even confirmation features of nearly every pulmonary hypertension assessment conducted in the United States and elsewhere. They formed the basis for his opinion.

While statistically sound, these instruments do not address the many different types of PH, resulting in all too common diagnostic delays, disease progression and needless suffering. Clinical indications which can be quantified exist but are not usually detected during standard evaluations, such as presenting problems which are intermittent in terms of symptom intensity, as in sporadic pulmonary hypertension. Chronic thrombeombolic PH, that's where the spinner stopped on my wheel, and does not necessarily respond to standard evaluation as would idiopathic PH, and so on... I cannot state unequivocally how many different type/classes of PH have been identified, but my last count was between 8 and 10, which is quite likely an underestimate.

A subjective issue about which I have received multiple comments from other PH patients involves the use of outward personal appearance as a yardstick for overall health status. At least initially. Many of the replies to "my, you look great today!" are quite humorous and very creative. And ironically, most folks, regardless of their illness, do not wish to show up at their doc for help only to hear about how wonderful they appear! PH in particular is insidious in its tendency to hide beneath a superficial facade of decent health.

Diagnostically, right heart catherization is the gold standard, as we all know. Yet even it can be fickle. Today's advanced diagnostic imaging is imperfect. Indispensable of course, but imperfect nonetheless. During my all too common sleepless PH nights, I have reviewed volumes of nationally respected research generated by quality physicians at well-respected institutions, and there is a trend developing toward a more comprehensive clinical assessment. Including not only quantifiable information, the scope is expanding to include what are considered subjective measures, such a quality of life, extent of patient support system and daily functioning, ability to accomplish goals, as well as sleep quality and pain management.

After all, if we could all participate in a six-minute walk and the other function tests once a week for a year, if PH existed, it would be hunted down eventually. The alternative is more inclusive evaluation, drawing from the leading work in multiple areas relative to PH as a class of diseases. In my particular case, employing additional heart catherizations as a diagnostic instrument has been avoided for three years due to "risky" primary and secondary diseases. Consequently, the aforementioned recent, expectation-laden journey to a well-respected teaching hospital, famous for it's experts, resulted in what was perceived by some (and oh, yes I was a member at first) as basically the end of the story. This rendering, these thoughts, helped me to resolve any doubts and get on with the daily struggle to deal effectively with PH.

Don't get me wrong; while I chewed this dilemma every which way and back again, I wasn't having one of those rare 'good days', as I did during the PH assessment. I recall thinking during a pulmonary function test; I know I'm going to hit a home run on this thing, because expiration is not my major challenge. But during a 24/7 02, and too much TV day, when fatigue steam rolls me, I would have fumbled getting any inspiration worth reporting. I would have fallen asleep and missed the game. Excepting emergencies, timing an evaluation for a highly symptomatic day appears to be a poor approach; at least for me.

Which brings me back to that finely considered repair for my closet door, when the realization that the presence of other, perhaps more credible evidence was laying out on my coffee table. I raced, hobbled, banged my 02 bag against myself, but did reach my objective. The haste was necessary lest I forget why I went looking in the first place (oh the PH moments!). My prey was the fall 2009 Issue of the Pulmonary Hypertension Association Newsletter, "Pathlight". Slightly off-task but worth mentioning. I read elsewhere in a PHA publication: "When you can't breathe, nothing else matters." Absolutely no way I can conceive to improve on that sentiment.

Two articles I had read seemed not only to be relative to my recent experience, but to the slow but certain transition to a system of PH diagnostic techniques which reaches beyond intrinsically institutional factors. The first, from "Phenomenal Lives", written by a PH patient who was frustrated by multiple misdiagnoses, vividly described the process of delay after delay before diagnosis and treatment were attained. In this case, 14 years transpired before a diagnosis was attained. Her spirit undiminished, this incredibly resilient PH patient is now a stout advocate for PH education, awareness and research. The second article, the one that pulled me in like a hungry rainbow trout, was under "Meet the Doctor", and composed by PHA Medical Education Program Associate Christa Donald and Kaitlyn Benneville, Former PHA Web Services Intern. It features Dr. Stephen Mathai of Johns Hopkins Hospital, and after reading about his approach and objectives and hopes, the establishment of a more comprehensive PH diagnostic evaluation system seems like just a matter of time. Time, however, is and will remain unconcerned and unhelpful for most PH patients. Only continued research and determination will unlock the keys to both diagnosing and treating this terrible disease. "Dr. Mathai and his colleagues are attempting to improve the outcome for these patients. He is also interested in developing new tools to measure progress beyond the six-minute walk and lung function tests. Dr. Mathai believes scientific measures should also reflect a patients quality of life, looking at such areas as depression and anxiety levels, sleep quality and the like".

Whatever the cause, I am very grateful my thoughts collided where they did this evening. While my closet door remains neglected, I have a small measure of peace of mind that might convey more strength on a rough day, or two consecutive hours of restorative sleep. Hope is both a very fragile burden and a headstrong, immovable force for change. It is where the inherent discrepancies meet that I believe true progress occurs. And it seems to be happening, thanks to the members of organizations like the Pulmonary Hypertension Association, American Heart and Lung Associations, Dr. Mathai, countless researchers, and all the undeniably tough, determined PH patients who do not give up, and our physicians who never settle, never stop learning.

So, that likely over-describes my little epiphany, It was a blessing to finally gain more perspective, as PH can consume so much thought and energy. However, I could not drag myself off to some uncomfortable sleeping position and likely visions of the miserable closet door until I provided heartfelt gratitude for those PH patient fighters. An unsung hero. I met Merle Reeseman through the PHA Help Line and we have been friends ever since. And what a Blessing, indeed. She inspires many and asks for absolutely nothing in return. Her encouragement allows me to consider hope as something other than deferred despair. Also, I would be remiss not to acknowledge my Critical Care/Pulmonary Medicine doc, who has been effectively treating my PH for about six years. He also helped to save my life during a massive pulmonary embolism in 2006. Humble and dedicated to his patients, this outstanding physician has established such an impressive record that folks come from all over the U.S. to study under him. My PCP is a compassionate young woman who is not intimidated by dealing with tough quality of life issues and pain management. I consider myself both blessed and very lucky to be involved with these physicians.

Following my appointment with the PH specialist, I was admittedly quite discouraged. And a good month of learning and introspection and conversations were required before my tiny epiphany occurred. Perhaps now I'll address the home repair issues, but I anticipate continuing to try to improve my understanding of PH whenever and wherever possible. Finally, (yep, I'm nearly finished!), I would like to reach out to the previously described, constantly misdiagnosed PH patient, who indicated in her article that she often wondered and struggled with the idea that God had given her PH and all its' many demons, and it was seemingly too much to bear. May I just suggest, without imposing my personal beliefs, that perhaps God was not responsible for the PH, but for the strength and determination which have enabled her to obtain a proper diagnosis and deal with the debilitating disease.

And the battle continues....

Rod ~ PH Patient

Tuesday, June 2, 2009

Symbols of Patriots


The use of the eastern diamondback rattlesnake as a symbol of the American colonies can be traced back to the publications of Benjamin Franklin. In 1751, he made the first reference to the rattlesnake in a satirical commentary published in his Pennsylvania Gazette. It had been the policy of Britain to send convicted criminals to America, and Franklin suggested that they thank the British by sending rattlesnakes to England

In 1754, during the French and Indian War, Franklin published his famous woodcut of a snake cut into eight sections. It represented the colonies, with New England joined together as the head and South Carolina as the tail, following their order along the coast. Under the snake was the message "join or die". This was the first political cartoon published in an American newspaper.

As the American Revolution grew closer, the snake began to see more use as a symbol of the colonies. In 1774, Paul Revere added it to the title of his paper, The Massachusetts Spy, as a snake joined to fight a British dragon. In December 1775, Benjamin Franklin published an essay in the Pennsylvania Journal under the pseudonym American Guesser in which he suggested that the rattlesnake was a good symbol for the American spirit:

I recollected that her eye excelled in brightness, that of any other animal, and that she has no eye-lids—She may therefore be esteemed an emblem of vigilance.—She never begins an attack, nor, when once engaged, ever surrenders: She is therefore an emblem of magnanimity and true courage.—As if anxious to prevent all pretensions of quarreling with her, the weapons with which nature has furnished her, she conceals in the roof of her mouth, so that, to those who are unacquainted with her, she appears to be a most defenseless animal; and even when those weapons are shewn and extended for her defense, they appear weak and contemptible; but their wounds however small, are decisive and fatal:—Conscious of this, she never wounds till she has generously given notice, even to her enemy, and cautioned him against the danger of treading on her.—Was I wrong, Sir, in thinking this a strong picture of the temper and conduct of America? B.F.

Found this interesting. Howz come we don't write like this anymore...

Smile -- it's contagious

Saturday, May 23, 2009

Life - Liberty - Freedom


You've heard of high blood pressure (hypertension), a common condition that affects the way your blood flows through the arteries in your body from the left side of your heart. A less common type of high blood pressure, called pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart.

Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely.

As many of you know I volunteer for the PHA Help Line -- yesterday I received a call from a soldier and I thought of the above.

He wants to decorate his 1999 Malibu in memory of his wife who died 4 years ago after struggling for 5 years with PAH. He called to ask for permission to use the PHA logo along with the website, the flame of hope and the purple ribbon would go from tip to stern. He also wants to put PATHLIGHT on the side overlapping the doors. It would be a PHA logo in motion.

He told me how he put on over 300K miles on this car -- his wife's car -- driving her to and from appointments first to Duke when they lived in NC, then when they moved to KY to the Univ of KY. We talked of treatments the care involved and the grief that can follow.

Since her death he has continued to donate $100 per month to PHA in her memory. He is now stationed in Afghanistan and as we spoke I could hear the roar of the jets as they flew overhead. When he returns from Afghanistan this December, he will start decorating the Malibu and raise awareness about pulmonary arterial hypertension.

He also mentioned how he has educated the medical staff there about this disease to the point that one of the nurses who was going for an additional degree did her paper on PAH... He is such an advocate for all of us in the PH Community. He made me proud I had the opportunity to speak with him.

Let us truly appreciate, especially this weekend ~ Memorial Day Weekend, how our soldiers go above and beyond the call of duty not only to protect us but also to be such advocates for our cause.

Let's remember to pray for those in uniform. In memory of those who have died so that we may live the life to which we are accustomed to living and in honor of those who still defend those rights and our liberties -- both who have paved the way for our freedom.

Every day should be a day of rememberance to those in uniform -- A Memorial Day of sorts but more.

Merle - Now is a time to SMILE -- to show our thanks -- and remember it's contagious

Since December 2000 in an effort to help Americans
remember the true meaning of Memorial Day the
"National Moment of Remembrance" asks that at
3 p.m. local time ALL Americans pause for moment
of silence in remembrance and respect.

Thursday, May 14, 2009

HAPPY MOTHER'S DAY


What is a Mother -- a Mom, a Mommy, a Mum or to some it is Mother...

She's the one who kisses that boo boo and makes it feel better, the one who listens to what you have to say -- and sometimes does not agree with what it is you are saying but still listen. The one who gives out hugs and expects to get many more back.

Mom's are among the ones who help you learn lessons of life -- like baking cookies, some can even teach you how to sew -- some can not *;* ~ how to cook a meal, wash clothes, many of the "daily tasks" that seem so behind the scenes but are there. Many Moms do this but again, many can not. They teach responsibility.

Lessons on how to get along with others and how to make friends -- how to settle an argument. There are volumns to be learned and in return Moms learn from their children as well. They can teach you how to play sports -- how to dance... their circle of knowledge is vast; their teaching ability seems unlimited.

They learn and share their compassion, to feel anxious when their children arrive home later than expected; to feel grief when a child is lost to a greater being or dispair when a child is lost to an unknown disaster of life such as drugs or alcohol ~ when that road of life goes astray.

Mom's, Mother's, Mommies show love, caring, compassion and responsibility -- it does not always show from the viewpoint of a child but trust me when I say they do love their children no matter what.

A Mom

Tuesday, May 5, 2009

The Ceiling -- Part Three


The disrepair was about to begin, or repair or whatever it should be called... Tom had taken down all the old tiles and the next day he and Byran came over to help put up those runners and put the new ones in. Things were moving along smoothly and that should have been a hint as to what was about to happen. They figured about a 2 hour job at the most and I would have a new ceiling... another hint.

Bryan -- who recently became engaged to our daughter Tammy -- wanted things to be right. His heart is in the right place... that corner where the plumbing was repaired for the upstairs was just below the level of the tile. He said if we pull up that pipe with an old wire coat hanger, it should work -- another hint of doom and disaster. The plumbing hung down about an inch below the tile. I said you could cut an area out, it wouldn't really show....I was thinking of an easy way. It was decided to pull up that plumbing and do it right. Now the chore was finding an old wire coat hanger and that believe it or not was a chore. We finally found one in an upstairs closet. Pliers, screws, the operation was now underway. Slowly the plumbing was brought up to where it should be BUT WAIT... one little side tract of the plumbing was still too low. So a trip to the hardware store was in order. A bracket or brace was needed over here, might have to cut an inch up on this pipe there, then connect it back up again....

They returned from the hardware store, cut a little here, connected a piece there and viola it looked great and should be perfect... So Tom goes upstairs and runs the water in the tub. Bryan and I are downstairs with our fingers crossed and a little drip is spotted. So back to the hardware store to buy something for the "joints", not sure what was wrong. I think it might have been a larger plier to tighten up a connection but I'm not sure. A slop of this here, wipe at little there, tighten this here make sure that's ok there. Tom goes upstairs again and runs the water -- NO LEAK. Whoo Hoo. Then all of a sudden we hear this CRACK, Bryan and I look at each other -- no leak... then all of a sudden there is water running down the side of the wall and he yells to Tom to shut the water off.

Well wouldn't you know, the Y connection between the commode and the tub, the sewer line, snapped. OH NO BUCKWHEAT. So back to the hardware store, need pipe for the size of the sewer line with the proper things to make a conneciton. Some of this, some of that -- good thing they bought that special glue and those pliers.... Finally they finished, Tom goes up stairs once again to run the water -- NO LEAKS... DA DAH Time now to cut that last piece of tile to fit into that corner...

So what should have been a 2 hour job turned into a 2 day job but it sure does look beautiful.... Now for the kitchen wall...

Smile -- it's contagious and it sure helps when doing something like a cieling :o)

Tuesday, April 28, 2009

The Ceiling -- Part Two

If you note the date on the pictures of my ceiling you will notice it was a couple of weeks ago -- yes Jen a couple of weeks ago *;*

I had sooooo much trouble with the pictures I never posted it -- I also had another picture with the "guys" working -- don't know what happened but I lost the picture and what I posted along with them.. Worked on it two hours this morning, got the 3 pictures the way I wanted and lost my epistle.... then lost the other picture so I decided to leave well enough alone and write this allllll by itself. So here goes.

Since I moved downstairs, about 16 months ago, the ceiling has been in disrepair -- isn't that just a wonderful word... disrepair -- needs fixin is what it is all about. Every now and again I would mention about the ceiling... every now an again I would get a smile -- one of those smiles that mean when the right time comes it will be fixed/repaired. Tom decided he wanted to do the whole ceiling not just those that were stained or missing. Just in case there was a color difference -- made sense to me.... soooooo.... patience is a virtue....!!!! Six years ago the upstairs bathroom sprung a leak and soooo the easy way was to do that repair was from the first floor. New plumbing was put in -- new sink, commode, I kept the old claw foot castiron tub and added one of "those" shower heads with the loop tubing that you hang your shower curtain and shower head from... anyway... the upstairs bathroom was fixed. The ceiling (in my diningroom) was left in disrepair -- I think I'm beginning to like that word. *;*

Well, a few weeks ago, proably a month or more now, we took the truck, went to the big city and bought some ceiling tiles and those runners that they lay on... now that's a start. The future of having a new ceiling was really in view. Whoo Hoo.

I had mentioned to my pastor on one of his visits (it is embarassing to have folks visit and have them think the sky is gonna fall in on them) that I had hoped it would be repaired by Mother's Day -- of course this was last year when I said that :o).... When Mother's Day came and went and the pastor came again -- he said "Well, did he mention which Mother's Day".... I think he has a typical male sense of humor. I'm sure I responded with a pleasant but smirky smile. :o\

My friend who had moved to Florida a number of years ago was up for a visit. Our plan was to go out to lunch so she stopped to get me. I met her outside... we had a wonderful lunch, caught up on not seeing each other (we email and talk on the phone often). We stopped at a couple of stores on the way back. She helped me bring in the "stuff" from the stores so my intent was to show her the apartment and have a cup of tea or coffee. Well, we walked in the door and low and behold I saw some tiles on the floor. Whoo Hoo, Tom had started to take them down. I had mentioned to my friend at lunch about the ceiling but never expected the work to start that day. My standing joke is == which Mother's Day will it be fixed by. She totally understood my frustration.

To be continued....

Smile - it's contagious

Tuesday, April 14, 2009

Thursday, April 2, 2009

TV and Pulmonary Hypertension


Well hold me back. Yesterday, April Fools Day I was asked to be part of an "Awareness" program for PH. --> that's me doing a cartwheel.

I should back up some. We have an upcoming PH Support Group meeting and one of the Pharma Reps asked if they could sponsor a program about cooking and having a local celebrity do the program -- no salt and using herbs and spices. Sounded super good to me so it was looked into and we were finally able to make it a go.

I was excited about the presentation or demonstration for our Support Group and I was asked if I could come and meet Rania, our specialty cook; so Tom and I went for a ride to Pittsburgh. We met, discussed the type of foods that would be possible, suggestions, comments the usual when you are trying to make things work just right. Then Rania asked about Pulmonary Hypertension and it's causes and such. I started to tell her "my story" and she said you need to go on television. She does a weekly cooking program on KDKA a local TV station in Pittsburgh. Well, the wheels get rolling on that one. I am anxious, I am excited, I am emailing back and forth information about pulmonary hypertension, its causes, treatments and how we (those in the PH community) are anxious for a cure and the need for more awareness. I'm emailing to Rania, the producer for the proram show and just sending anything and everything I can think of. Trust me when I say I have a lot of info in "MY DOCS"

I was so excited the night before I didn't sleep well, I think I was afraid of oversleeping as we needed to be there by 8:15; which meant we had to drive to Pittsburgh during rush hour traffic. Now according to map search it's just over 50 miles to where we were going -- which is right in downtown Pittsburgh and the guesstimate to get there was approximately 55 minutes... Ya right, do wish these computers had some common sense about traffic... We planned to leave by 6:30 and we left by 6:35 not too bad considering all I have to take with me.

I had notes -- I contacted PHA to let them know the exciting news, Katie wrote back and sent me some helpful hints as I tend to overwrite when I want to say something -- did any of you out there ever notice that???? Anyway, I had it down pretty good, I contacted both of the PH Centers (AGH & UPMC) in Pittsburgh asked them for some specific info -- again I had a lot but hey I was going on TV. I wanted to have it right. They each sent me some info and I was good to go.

I had the symptoms of PH, the possible causes -- secondary pulmonary hypertension, I had the new PH bill HR 1030 - The Tom Lantos Pulmonary Hypertension Research and Awareness Bill of 2009. I brought a copy with me, I had a copy of the letter to mail to your Congressperson, I brought my camera. For me I had my back up medicine, my mixed medicine, my back up pump, my back up ice packs, my back up oxygen; and all those other needed supplies just in case. I was good to go.

We arrived on time, we were shown to the "green room" which isn't even green and waited our turn. BJ and Rebeca arrived we were then shown into the studio -- another whole different story -- and wired up. Just what I need, another wire *;*

We were told we would be second on the agenda.. a Harlem Globetrotter was to be first. Then there was a call, he was stuck in traffic and we were on. Nothing like being prepared... they must anticipate those situations as we were ready. The producer and staff were so gracious and curtious to us I was truly pleased. The reporter, Keith, was a cool and very professional guy. I do believe the presentation went well. The program not only include our awareness speil but also the cooking demonstration and a segment on no salt vs herbs and spices. All for Pulmonary Hypertension.

When you get to the site, look at the little video on the right and let it scroll until you see a hot pink jacket -- that will be me. If a newer PTL is on, go to the video library and look at April 1st -- it will be there and that segment is titled "Living with Pulmonary Hypertension. KDKA also put a link to the Pittsburgh PH Support Group. I hope you enjoy the presentation as much as I enjoyed being a part of it -- so here it is: Pittsburgh Today Live It has moved and you will need to go to the April 1st previous video library . This is the direct link to "Living with Pulmonary Hypertension".

Don't forget to look at Rania's cooking segment and Leslie's info on salt and herbs -- same Pittsburgh Today Live for April 1st - they both did a special about PH and cooking.

Remember to smile -- it's contagious

Merle

Tuesday, March 24, 2009

Hot Diggity

I GOT MY CAR BACK. This may not sound like a big deal BUT IT IS! I have been without my car for 2 full weeks. Now mind you I don't go out much but when I do go out, I would rather get to places with my "automobile" than walk... and if it came to walking well I probably just wouldn't go. Tom went and got it for me Monday -- the 3rd Monday it was at the geerage.

This morning I just had to give it a try -- word was they didn't even know how it started let alone moved. Went and had my blood work done but it got me out the door and into my "automobile". It moved out pretty good and now that I think about how it rode, I'm wondering if my car had a case of pulmonary hypertension!!!

Before it was fixed when I drove along, it would slow down when I went up a hill and gave it some gas -- does this sound familiar? If I were on a level it would go ok. If I had one of those "situations" I would pull off to the side of the road, shut it off, count to 10 and start it up again and it would be fine. Well, that one doesn't quite work when you have PH but I think you get the drift. It did have a transplant -- new fuel pump and gas tank.....

It now has more zip than I remember it having for quite some time. Guess it really needed to see the "automobile" doctor. *;*

Remember to SMILE -- it's contagious

Merle

Thursday, March 12, 2009

For better or worse ~ from better to worse


Some of you know that last Monday Tom brought my car to the dealer -- 8 a.m. to be exact. He called me at about 8:10 saying it would be a while for them to look at it and for me to come get him. He had taken my car the night before, left the pick-up for me and the plan was put into place. The Aurora is an automatic and the pick-up is a stick-shift. Now one car prior to the Aurora was also an automatic but before that all the vehicles I owned were stick shifts... even had a little sports car once. When you are in business for yourself you need the right "tools", one being a nice car.
Anyway, I get into the truck which in itself was a challenge because it is a TRUCK and off I go to the next town over which is about 10 miles away. Tom had backed the pick-up in so all I had to do was go forward.... *;* does this sound like I am leading up to something :o) I haven't driven a stick shift in about 6 years but I guess it's like that saying about riding a bike... once you learn you don't forget how to do it. I chugged a little at first but finally got that smooth motorin action I needed... had 5 lights to go through and wouldn't you know every one of them was red when I got to them. I was doing pretty good, I got Tom, we came back to my place. We waited all day and finally just before 5 p.m. the car dealer -- service department -- called to say they really didn't get a chance to look at it !!!!! But they had taken it for a drive and there is a problem.
Tuesday comes and they call and say it needs a new fuel pump and that the computer thingie they put it on said a lot of other things were showing up. Now John -- service department -- is thinking once the fuel pump is put in, it will take care of most if not all of those other glitches but of course won't guarantee that. The cost for the fuel pump and labor will be about about $800. Tom called a couple of places and got a better price but not by much and he calls John who then tells him if they use another fuel pump they cannot guarantee the part or the labor even if they do the labor. So we decide with the kind of luck I have it wouldn't be worth the few bucks saved. Then I'm thinking where am I gonna get that kind of money -- that's more than I get a month plus another 1/3 again... Tom is all upset about the money and I'm not sure why because he's not allowed to help me out financially and he wouldn't have that much anyway. I've learned not to worry any more about money -- I can only do so much and worrying isn't going to help with the condition I'm in. We gave the o.k. and they were to order a fuel pump -- it will take a day to get there.
Wednesday comes and so does the fuel pump. We get a call -- ut oh -- while they are working on taking out the old fuel pump, guess what!!!! The "neck" connection which is from the gas tank is all rusted out and falls apart so now it needs a new gas tank.... AND GUESS WHAT ELSE... the car, my beautiful Aurora, is 12 years old and they don't make them, the gas tank, like that any more... soooo they start to call all around to see if they can find one. THINGS ARE GOING FROM BAD TO WORSE and I'm thinking I should pull my hair out, I have enough hair and it might make me feel better. Nah, that won't make me feel better and besides, it will hurt, no mights about that one.
Tom calls me when he gets home and I can tell by his voice that something is wrong -- he says guess what :o( I say what and he said when he got home and backed in the garage the brake line broke so there he is out in the country no truck, me in town no car... he is so upset. I'm thinking, well I won't tell you what I'm thinking. I try to calm him down and told him we'll worry about that tomorrow... He calls Tim, our son, who doesn't live that far from him, Tim comes up, looks under the truck and says Dad I think we can fix it. They go to the auto parts store buy a new break line and viola, they fixed it. Tom calls me later and said he was just so worried if something else or anything should happen to me likle needing a ride to the hospital etc... he worries about me sooo much. Although right now I'm doing ok, it seems there are times when something will happen and it's a trip to the Cleveland Clinic -- I have pulmonary hypertension and my specialist is there. It's a life threatening disease and I and anyone else who have it has to be very careful with maintenance of this disease and it has totally changed my life.
Thursday comes and no call. The last estimate is between $1200 and $1400. Now Saturday is my support group meeting just outside Cleveland and no car. John said if it wasn't fixed by tomorrow, Friday, then we could have a loaner for the weekend. Glory be.
Right now I need to take my own advice -- SMILE ~ it's contagious *;*
Merle - OHPA

Thursday, February 26, 2009

Advocacy is the extra bag I tote


A new bill was recently presented in the HOUSE - HR 1030. It is about Pulmonary Hypertension and what this disease can do and now we desperately need to have our Federal Representatives co-sponsor this bill. I have written to several and will continue to write to more until we can get this bill to pass in the HOUSE and move on to the SENATE. This is what I emailed.

Honorable Congressperson (you can copy this and fill in your Representatives name):

As a member of the pulmonary hypertension community, I urge you to co-sponsor H.R. 1030, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

Pulmonary hypertension is a simplified name for a complex health problem--continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can lose its ability to pump. Many associate PH with common high blood pressure instead of a distinct and grave illness. Someone with high blood pressure can live 30 or 40 more years. Without treatment, 50% of PH patients die within 2.8 years of diagnosis.

Symptoms of pulmonary hypertension may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. Pulmonary hypertension is described as progressive and fatal.


The sooner a PH patient receives effective treatment, the better their prognosis. Several treatments are available, but patients see an average of three physicians before a fourth makes an accurate diagnosis--often losing a precious year, or more importantly, the deterioration for quality of life.

The Tom Lantos PH Research and Education Act of 2009 Co-sponsorship of H.R. 1030 brings us one step closer to...

  • preparing more physicians for prompt and effective management of PH
  • raising public awareness about PH symptoms
  • increasing the effectiveness of clinical researchers in the PH field


Your co-sponsorship supports improved diagnosis, improved treatment and the search for a cure to this deadly disease. Please help slow the progression of this dastardly disease and extend our quality of life.

Thank you in advance for your valuable support.


You sign your name along with address and phone number. To find out who your Representative is go to: http://www.house.gov/ type in your zip code (may need those additional 4 digits) and send it on.


To those of us with Pulmonary Hypertension this is so very, very important. We almost made it last time -- and every minute counts with the 111th Congress -- politicians can be slow as busy as they get.


Remember to SMILE ~ it's contagious


Merle


Saturday, February 14, 2009

HAPPY VALENTINE'S DAY


It's called sweethearts day -- and many other endearments. We send or give or receive flowers, candy and sweet cards or notes saying how special someone really is in our lives. We write romantic poems or fun and lovey sayings. Something to make this day special and loving.
The history of this day has a few mysteries that follow it, one being: "One legend contends that Valentine was a priest who served during the third century in Rome. When Emperor Claudius II decided that single men made better soldiers than those with wives and families, he outlawed marriage for young men — his crop of potential soldiers. Valentine, realizing the injustice of the decree, defied Claudius and continued to perform marriages for young lovers in secret. When Valentine's actions were discovered, Claudius ordered that he be put to death. While in prison he fell in love with his jailers daughter and sent her notes signed "from your Valentine"..... So there you have it -- or one of them.
Now I didn't get flowers for Valentine's Day but I did get a HUGE box of chocolates. I couldn't find an appropriate picture of a box of chocolates so hence the picture of roses -- another symbol of love and affection. This box of chocolates is too big to fit on my lap now that's a lot of candy. I have limited myself to only 3 pieces of chocolate a day -- I should be done in about a month. It really is big.
Tom and I celebrated Valentine's Day by giving each other lovey dovey cards... he is so good about getting cards and buys just the right one and he also brought over lunch and the chocolates.
Our one daughter invited us for dinner on Sunday (the 15th) -- we had steak and shrimp and fixings and this was also to celebrate our anniversary which is today. I told the kids today is so special because it is our anniversary and it is also a Holiday (President's Day) *;*. Again special cards but no special lunch == I had made a meatloaf Saturday night and we had ml sandwiches... good enough for me and it was for Tom too.
Remember to smile, it's contagious...

Merle

Wednesday, February 11, 2009

Be Prepared


This past Sunday was Boy Scout Sunday at the church my daughter and her family attend. Jerod is now a Boy Scout and Nolan is a Webelos or Tiger Cub -- not sure on that one, whichever is the youngest. I was invited to attend this special service to honor scouts and scouting.

With the exception of the Pastor doing prayer requests and upcoming notices, the whole service was conducted by the Scouts. From the Scout Master, Den Mothers, Scout Leaders to the scouts themselves, a brief history of scouting, the religious aspects of scouting; Bible scripture being read and applied to their daily living. It was a very impressive presentation. Of course, anything involving my grandchildren is going to be impressive and emotional for me... *;* Jerod carried the Boy Scout Flag in and also did a "reading", Nolan helped with the collection and had a proud toothless smile when they all sang their songs.

"Scouting has always been about preparing boys for life," says Chief Scout Executive Jere B. Ratcliffe. "Through the Scout Oath and Law, almost 99 million youngsters have learned to help and respect other people, exercise their minds and bodies and know right from wrong." A recent study by Louis Harris & Associates found that three-fourths or more of Boy Scouts believe the program teaches them right from wrong, helps them feel more self-confident and provides them with new skills. I think we all know this part of scouting.... To be prepared.

And being prepared brings me to one of my adventures that has almost become typical for me. Last Friday, Hailey, my granddaughter (cousin to the above boys), was having a concert at school. As mentioned, if I am able I will attend anything I can that involves the grandkids. Well, it happened to be a night that my friend was coming for dinner; she also was looking forward to seeing the kids preform. So when Mary Lou arrived, off we went to the Middle School; next town over and about 10 miles away. I drove. We were about half way there when my car started to act up. It slowed down when I gave it gas and then it would (pardon my English) fart :o) I haven't a clue as to what would cause this. Mary Lou said be sure when I go out again to have someone with me -- JUST IN CASE. Wow, does that sound familiar. (I might get into that later)

The concert, I think a better description would be talent show, was awesome. Those kids; 6th, 7th and 8th graders were amazing. Some sang by themselves, some in groups of 2 or three. Some had amazing voices, some sang off key. Some played the guitar, some drums one even played the piano. Just brought a smile to my face and tears to my eyes -- and it was soooo LOUD. But a great performance by all. I got goose bumps when Hailey and her friend sang their song. They done good. (I also brought my tape recorder and recorded her singing -- and remembered my camera this time)

The trip back home was pretty much ok, my car did act up a bit but not like on the way over. We made it home, cooked dinner and chatted the evening away and I think maybe my car needs to be used more than once or twice a month.

Now for my being prepared. When I go out anywhere I have a routine of sorts. I have my back up medicine -- JUST IN CASE -- I have enough oxygen, plus extra -- JUST IN CASE -- I bring my cell phone -- JUST IN CASE. I am ready for any minor inconvenience -- JUST IN CASE. Well, Sunday on my way to church, I did have my medicine and oxygen but I forgot my cell phone -- left it on the charger. Dang. I was about halfway to the church when I remembered and I thought to myself -- self, people survived many years without cell phones. I will be fine. I get to the interstate area (have to drive past it) when the car started acting up. Now luckily the speed limit isn't too fast at that point because my car was barely moving. I knew I couldn't stop there as I was on the overpass and I was soooo hoping I would make it across the bridge. I did put my flashers on so those behind me would know I wasn't being some senile old person not knowing how to drive *;* and finally found a spot where I could pull over. Well, low and behold who comes pulling up behind me but a State Trooper. Whoo Hoo. He comes to the car and asks if everything is o.k. I explained that my car was acting up and even mentioned the farting -- well how else can you describe what was happening. It put a smile on his face too.... He said he didn't know that much about things like that and asked where I was going. It would be another 3 or 4 miles down the road to the church. He said he had something to do and would drive out that way after to make sure I made it. I made it -- the church service was great -- I made it home with a couple of fartters... Life is good. I'm not going to get into living life and having pulmonary hypertension and all the restrictions and complications that are involved with that. This is long enough -- read some previous postings.... :o)

Now don't forget to SMILE -- it's contagious

Merle

Saturday, January 31, 2009

Steeler Fans

Now I'm not much of a football fan BUT I do know when you live in Steeler Country it is something special to behold and that's not just for the Pittsburgh area. There are Steeler fans all over this country and I'm sure else where in this world. :o)

Now don't get me wrong -- I may not enjoy watching football but I am a Steeler fan. I will root and cheer along with the best of them and it's a thumbs up for a win or a mention of their name. And BTW -- they, the Steelers, need another Super Bowl ring for their other thumb. *;* That would make 6, yes 6 Super Bowl wins.

The first Super Bowl game was played in 1967 in Los Angles and in 1979 the Steelers had their first win. Only 2 other teams besides the Steelers have won 5 Super Bowl Rings. The Steelers really are an awesome group of players and I wish them well. I guess I don't really need to say that as they will WIN... Go Steelers. Over the years the Super Bowl has become the most-watched U.S. television broadcast of the year. Super Bowl parties are a "thing". Team items are a "thing".

One of my friends asked me what the Terrible Crying towel is -- so I took a picture of mine on my sofa.... And this is a little bit about it:
In 1996, Myron Cope, a radio broadcaster for the Steelers, created a gimmic. This has become a legend in its time and in 1996 he gave the rights to The Terrible Towel to the Allegheny Valley School in Corapolis, Pennsylvania. The agency provides care for more than 900 people with mental retardation and physical disabilities, including Cope's autistic son. No proceeds went to Myron Cope and trust me when I say, it's a big seller. Just watch a Steeler game and see them being twirled around.

Here we go Steelers, Here we go.... Pittsburgh's goin to the Super Bowl ~ Here we go....

THEY WON!!!!

Now don't forget to SMILE -- it's contagious.

OHPA


Wednesday, January 28, 2009

Well, Glory Be


I know this may be a weird picture for this time of year BUT I just figured out how to get pictures off my cell phone. This was taken last November at the Symposium the Cleveland Clinic had and yes that does say 503 lbs on the pumpkin. Using my head for once, I thought if I just take a picture of the pumpkin it would look like a pumpkin BUT if I took a picture of a nurse NEXT to the pumpkin you would realize just how HUGE it was... HUGE PUMPKIN ---->

Now for the Glory Be part. I'm sure you all get those wonderful automated phone calls about the warranty on your car has expired OR maybe one about getting free dish service for a month if you pay for the installation WELL.... yesterday the phone rang, I answered it and before I hung up on the recording I heard "to be remo".... I was just about to press the off button but I waited. The message said to be removed from further calls press 9 now. I did -- now lets see if that works. Today I received another one of those calls, and I thought.... hmm I wonder if pressing 9 will work on this one. I pressed 9 and I heard my phone number being read off and low and behold the next statement was this number has been removed!!!! Glory Be!!!!

I just had to pass it on. Don't know if it will work but hey, it's worth a try. My thought is once you press 9 be sure to wait for your number to be read... then I believe it will work... I' sure hoping it does. One of those won't hurt to try.

SMILE -- it contagious

Merle

Sunday, January 25, 2009

Winter Wonder Land

I want you to note the depth of the snow on my neighbors truck. Where the color changes is the top or hood of the truck. I was finally able do download this picture and believe it or not, most of that snow is still there. Been too cold to melt.

It has been one of those winters -- you know, one for the books. It has been extremely cold and not just here but across the country. We have had temperatures in the sub zero range -- although that is not uncommon, it is not typical; at least not this early in the season. The news said we haven't had temperatures like these in over 10 years. Kinda falls into place with the election :o) that was one for the books too.

I wish you could have seen the icicles that were on the houses too and I wish I had taken a picture of those. Since they can be very dangerous, most of the neighbors knocked them off before they could hurt anyone. Oh well, I'm sure before winter is over there will be more.

Remember to SMILE -- it's contagious,

Merle ~ OHPA

Sunday, January 11, 2009

BA DA BOOM


You know that commercial that has those 'priceless moments' -- well I had one the other night. My daughter called and said that Jerod was having his band concert and would I like to go and see it. WELL, HOLD ME BACK. Me go to one of my grandkids concerts. Don't think I've missed one yet. They range from someone singing in a choir, to a band concert. This was a band one -- the first of the season for 5th graders and the first ever for Jerod.

The music teacher / band leader had the students come out in groups according to their instruments. You know, horns, percussion, woods etc. They came out with huge smiles on their faces -- they were to stand quietly (and I mention this because it is very hard for a 10 year old to stand quietly) and enough time was given for the proud parents to take pictures. Darn, I forgot my camera and knowing my daughter I'll get a copy of the ones she took maybe sometime NEXT year. Just joking, well maybe not. ;o)

The students were in place, the band leader explained that this was the second time they had all played together -- the first time being 2 days before. He mentioned it may be a little bit of a bumpy performance and he was absolutely right -- it was priceless. He tapped the baton on the podium and the music, and I use that term with the deepest respect, began. I did recognize "Jingle Bells", I had great difficulty recognizing the other songs -- along with every one else who attended the concert. Trust me when I say there were a lot there. Parents, Grandparents -- I live in a small community but they are all about the children and very supportive of them.

Jerod was in the percussion section and there must have been at least 12 drummers drumming -- sounds like a song we all know -- any way his position was behind the BIG base drum. You know the one that would be about as tall as he is. It was on a stand and so from where I sat, and actually where anyone else sat, you couldn't see him. BUT, and you have to know Jerod, when a song was done -- two hands would go up in the air along with those drum sticks and they were Jerod's. Just tickled my funny bone. Even the band leader announced how enthusastic the percussion section was -- that end of it.

Those faces I could see were so intense when they played their priceless music. Cheeks puffing out as they blew into those musical instruments, arms moving to the beat of the song (drummers drumming) -- depending upon what the beat was, but it was an awesome perfromance. Some played on key, some did not. Some played in the right tempo, some did not. Again a priceless performance. They got a standing ovation from the audience. A proud and priceless moment.

Now the trip to and from the concert is a whole 'nother story. I have pulmonary hypertension and we have to be very careful when we go out into that cold evening weather -- the temp was in the mid teens. I covered my face, well nose and mouth to protect me from the elements, had my "just in case" bag with me; I was good to go.

Those of us with pulmonary hypertension have to be very careful. It is a rare disease and is life threatening and with no known cure at this time. My thoughts are with the research and trials that are going on, there is hope and that is what keeps me going. So as I have been known to say: SMILE ~ IT'S CONTAGIOUS.